Wednesday, January 11, 2012

Have you ever been on Mr. Toad’s Wild Ride at Disneyland? If so, then you may have an inkling of what goes on inside the head of my wonderful guest blogger, AnneMarie Ciccarella.

AnneMarie Ciccarella

Her story below and the posts she writes on her own blog, are a fast-moving, completely candid, hilarious, stream of consciousness that pull you right into the daily spins and turns of living with chemo brain. And now, HOLD ON TIGHT. Here’s AnneMarie. -- IDAnneMarie Ciccarella blogs about her adventures at www.chemo-brain.blogspot.com and can be found on twitter @chemobrainfog. She is still fine-tuning her direction and until that has been established, her bio simply reads, “Cancer rebel, irreverent blogger, wisecracking dim-twit.”

AnneMarie Ciccarella

Guest Blogger

When I started to learn about all of this chemo brain stuff, I began to hear certain catch phrases. One of my favorites? “Work-around solution.” A work-around solution is a way out of a jam that wasn’t the intended way, may not provide the exact results you wanted, but it is sufficient. Or, more accurately, you either let it be sufficient, or you continue on the path of I AM DETERMINED TO GET THIS EXACTLY THE WAY I WANTED.

Well, guess what? There is one choice and only one choice: just go with it already. Uphill battle and your brain is not giving in. Laugh. I’ve learned that my rigid and structured ways just have no place in AD time. (Footnote: AD is my way of referring to the period after active treatment. I decided to adapt the BC:AD calendar to refer to the way cancer has divided my life. If anyone would like to toss out suggestions, I am still playing with what those letters mean…“Another Distraction”…“A(new) Direction”… nothing has really grabbed me yet….. )

BRAIN: Come back…. Now, for those who never stood at a bar trying to remember that you like tonic with vodka, allow me to elaborate. You know when you are talking and you hit a brick wall. How many times have you stood in frustration saying aloud, “It’s on the tip of my tongue.” And then, whether it was a word or a movie or the name of a person, you know it’s going to drive you crazy until it comes to you. Sometimes, it will pop into your head.

You may begin to do some free association: “You know the movie, it starred Robert DeNiro and he was the father with the little kid who grows up… the kid, you know, the kid who was arrested a few years back in real life… oh, this is gonna drive me crazy, it’s on the tip of my tongue!”

If you are lucky, that will have been enough to either bring the title into your head or, if you happen to be talking to one of my kids, they will provide the title in a split second. Sometimes, it’s something that you may not figure out and it WILL drive you crazy. Back in the day, the choices were:

• Stop thinking about it and it will come to you (may or may NOT actually happen)

• Give up and have it pop into your head at the most random moment.

Today, there is an option “C,” which is my personal favorite: The Internet Scavenger Hunt. Let me see how many combinations of words I have to Google before I have the information. I’ve come to accept this OCD component that seems to be part of my particular case of chemo brain so I will always go with Option C. Maybe you do, too.

Or maybe one of my kids already helped out so this particular “tip of the tongue” episode passed without really being an episode at all. Or, if you were not quite that fortunate, you might be driving along, sometimes DAYS later and just blurt out the word or title. (Or, you may actually forget the whole conversation and have to apologize to someone for insisting they were crazy, just thought I’d throw that out there….) We’ve all done it. I know you can relate. I can SEE you nodding your heads.

That is the “it’s-on-the-tip-of-my-tongue dilemma” which is different from word dropping and if you don’t belong to the club, and I hope you never do, word dropping is exclusive to those who reside either in the fog of active treatment or are already in the AD portion of the journey. And, to clarify further, word dropping isn’t a distant relative of name dropping, and btw, I don’t like those people, the name droppers, I mean.

Word dropping is when the normal everyday word is right there, yes, on the tip of my tongue. I’ll fight for it to catch the train that will transport it from my brain to my tongue. Ok, take a breath. Not today? Time to implement my new skill and most importantly, to laugh at myself in the process.

What occurs next -- and this is in no particular order – I will either define the word or find a less suitable word. If I define the word, this could come off somewhat smart-assy if my definition sounds identical to the entry one might find in Merriam-Webster’s New Collegiate Dictionary (and yes, for the record, there is a copy on my desk, circa 1980). Sometimes, just like the old cliché about books and movies, the book IS better (than the internet). I may attempt to explain the word, a dangerous venture which holds a high degree of probability and I will be completely off topic within the first minute as I have now ventured into the world of What The Hell Was I Saying?

Alternatively, I will find a less suitable word which always pisses me off because for whatever reason, I DO know the substitute word is missing some small subtle something. (Gee, wonder if subtle and substitute have some connected root word prefix thing going on… going to check on that RIGHT NOW). Having CB OCD, that little nuance is of utmost importance because it does capture EXACTLY the essence of whatever I wanted to convey. When all else fails, I’ll blurt out an SAT word which invariably tends to piss off the person with whom I am speaking. I know they are thinking, "Seriously? Smart ass..," It’s written all over their face and besides, I do read minds. It's a curse.

Example? I was in the car with my daughter a few months ago and we were driving through some rural areas when a truck caught my eye. Why this was even a topic of conversation, who knows… maybe it was painted a pretty color or maybe we were both punch drunk from being in the car too long. Maybe you just can’t expect the city mouse to drive through cow country even if the city mouse is really living the suburban life. Could it have been I just grabbed the bottle of water beside me? No clue and I am SO DONE trying to figure out how these thoughts just zigzag in my brain. The point is, the truck resembled a concrete truck but it contained water.

Because I carry an enormous amount of useless information in my head, I knew this. And, I proceed to say something along the lines of, “The truck is transporting potable water.” HUH? WTF? Where did that come from?? Couldn’t you just say “drinking water?” What, you need to show off your vocabulary? But, I didn’t need to do anything… the word “drinking” or any form of it was simply not there. Potable was. I solved the problem by substituting a word.

That’s a work-around solution, meaning, not really a solution. It’s nothing more than a band-aid. There is a difference between “It’s on the tip of my tongue” and “word dropping.” I know, I do both. Not only can I can feel the difference, I will readily and gladly admit when it’s NOT a CB thing.

Why do I know? I haven’t a clue. But why must you ask??? The only answer I can offer is this. Perhaps you have great teeth or have been exceptionally lucky or were positively vigilant with your dental appointments?? I, however have a toothache.***

***Note: I am well aware this ending makes no sense unless you happened upon a blurb I wrote about attempting to explain the pain of a toothache to someone who has never actually experienced a toothache. It can’t be done. Similarly, it’s not possible to fully understand chemo brain despite how wonderfully it is explained. Some things you simply must experience on your own to get the full flavor!

Oh…. the movie? Did you think I would leave you hanging??? It’s “A Bronx Tale,” and the actor Lillo Brancato played the part of Robert DeNiro’s son, Calogero, just in case that was right on the tip of your tongue. Should you have any further entertainment questions, IMDB is a great source, or just start Googling words in any and all combos.

Postscript:

When Idelle and I first communicated a couple of months ago, I jokingly told her I owned a copy of her book and I’m sure it was one of the first ones off the printing press. As I began to think about what I might want to share on Idelle’s blog, I remembered that conversation. One of the most fabulous things I deal with regularly is a newer issue for me. I have a touch of OCD that seems to kick in all the time: The Details Matter.

With this in mind, it was ESSENTIAL for me to check Amazon because yes, the minutiae is far more important than the big picture. Thankfully, the good folks at Amazon have their act together and their diligence saved me countless hours of poring over credit card statements to locate the purchase.

At the very top of the page, I was informed, “You purchased this book on August 9, 2009.” I scanned the page for the publication date. July 14th. Idelle’s book was in my possession before there was a paperback or a Kindle edition. I will be sending my copy to Idelle for author signatures. It’s bound to be on par with Dickens. Yes, unintended but still, yes, a pun on “bound, “ and YES, seriously. The book is as important to “chemo brain” as is Dickens in the realm of great fiction.

Heartfelt thanks to Idelle for letting me be the court jester for a day and sharing some of my silliness on her blog! -- AnneMarie

12 comments:

I loved reading the blog. It seems to be the story of my life lately with words juggling inside my head and I am trying to pick the right one. For some reason, my spelling of words are also gone. All my life I have ben an excellent speller..now not so much. I actually seem to spell exactly how I say the word..phonetics?. Unfortunately, most people think chemobrain just happens while you are going through chemo. I have now downloaded an app to "improve" my memory. Maybe it will help....if I can just remember to do it. Hopefully! More people will undestand what this chemobrain thing is. Thanks for bringing it out there.

Really funny, a good illustration of how helpful it can be to have a sense of humor about a dire situation. It's so easy and tempting to wallow in the problems, but ultimately that doesn't do any good. Good luck, Annemarie!

I have sharp, clear days and I can sit and go through hours of paperwork, bounce between tasks, stay focused. I am truly "my same old self" again. Lots of the word I was doing is so detail oriented and number intense. When I'm "on" it's like nothing was ever wrong. My evaluation did show my weakness is around numbers. Not too good for someone in an accounting job! I am still overseeing lots of things but I am not comfortable with the daily responsibility. I was missing deadlines, transposing numbers and it became clear I was heading for serious business trouble. But yes, I do have great days. Not enough of them.. YET.... but I make sure to realize my limits and not to push myself. Stress is the worst thing for me.

I read and reread your article. Having awoken at 7 am on A SUNDAY MORNING, ok, bad start already, I was determined to fill out the forms my bank requires in order to preserve my home. I make my one cup of java, chase the cat off the kitchen counter, feed the dog, giver her her morning dose of insulin,then proceed to watch PBS for the latest dose of politics. The bank papers are downloaded on the laptop, but now firefox has told me I need to update. So I comply. OCD on the laptop, it is my life AC.(After cancer) After I reboot, I decide to check out my FB buds to see whats up for the day; the sad news about Whitney has hit the headlines.So I google. And google some other items that have absolutely nothing to do with my objective today. Hmmmph..But the dawdling and doodling did bring me to this site, so I say to myself "well, I suppose chemobrain doodling ain't so bad, I have discovered, oh what's the damned word, not friends, not comrades, heck, I'll think of the exact word word while I do the bank papers." It is now 1pm, another cup of coffee and then focus, focus and focus.When the right file slips back into the correct place in my brain and the word is recalled, I'll post. Could be 3 am, so I won't call, as I say to my very understanding friends :) Chemo brain; it sucks, but we're 6 feet up and not under.

Yes, we are 6-feet up (or in my case, 5-foot-8 up). Thanks for being there, Tigerlil, and for articulating a common frustration! BTW, are your initials MK? If so, great to hear from you. If not, also great to hear from you!

Oh! So slightly pathetic, tardy, and apologetic in my response! God willing the event will occur far into the distant future, but I will pre-arrange for a late start to my own funeral not only to celebrate my life, but to underscore my legendary tardiness. Clergy will be tipped off as to the correct start time however, as I fear this might reflect badly in my, hmm, already interesting eulogy. Bets will be placed as to just how late I will arrive, and handicapping of the exact start time will probably take place within earshot at my beside by dear friends who know this would delight me. My estate shall be owner of the bet should the winner predecease me. I digress, but toying with this has whiled away the time allotted to the weekend cleaning. Shame:) Macabre, but no subject is sacrosanct when you’ve walked, or in my case and most others, crawled past the Big C and all that it has to offer in the way of remedies. Many of us survivors wish that for just one day, one SINGLE bad chemo brained day, and preferably a weekend when they aren’t treating patients, we could shift into our ever-doubting and “You’re just getting older” oncologists’ minds to give them a close up of “What was I doing and how did I get here?” days. One can dream. In answer to your question, my initials are SSE. Using other fanciful names, however, offers me a moment's delight when these are given to a Maitre d; the bewildered looks on my friends’ faces are delicious! The blowback here is recollecting the name I gave only moments prior. Chemo-brain, albeit it a subtle (or not so) deficiency, is mercilessly used by me whenever an opportunity exists. Life presents these moments frequently and in the silliest of places; we have to go for the kill quickly, then pause as we reap the soul-healing reward of a long and deep belly laugh. While at the market, I find myself talking out loud to the fruits and vegetables while watching the 4 and 5 year olds stare at me, and wondering as I empty a 10 pound handbag on an already tipsy display where in the hell have I've put my grocery list (owning stock in Post-Its is a requirement for ACAB- After Chemo Addled Brains, please, someone, invent a way to LOCATE the note when you need it.) A full day's workout is complete via grocery shopping as I’ve walked the supersized store 2 or 3 times, muttering all the while about the damned list. I see you nodding. While filling my cart with oft tempting (5 kinds of imported chocolate!) and stunningly unnecessary items (smoked octopus, really?) I'm hoping that this once photographic mind will flash a nanosecond black and white shot of the list. Of course it does! 20 harrowing minutes into a checkout line with a purple-faced, screaming infant behind me and 3 women in front of me who must have been Grand Champions on that coupon show, I get a brain text of the list. One item. Milk. Only cost me $85 this time. Forgot my coupon book, it is under the list. Now.....where did I park my car?

HaHa! That is hysterical Tigerlil.... Any day that I can very vertical is a good day. Yep... OCD, ADD..... and google detours.... I decided my "AC" will be called "AD" ... I'm still trying to decide on words. "Another Direction" (kinda like that The New Normal thing they always preach!)... Not snappy enough..... Working on that, WHEN I remember.....

Always love hearing about someone else's day. Especially, when I can nod my head through the whole thing and say, "Yep, absolutely, I feel ya,"

I really enjoyed reading your blog.I laughed so much. I soooo can relate to it! I to ,laugh as much as possible about it. Its better then crying.lol To bad there wasnt a pill I could take to bring back my BRAIN :)